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Old 07-25-2007, 12:13 PM   #1
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Question Internal Spinal Stimulator

Ok... after going through just about every medication there is for PM (can't tollerate just about any of them without massive doses of benydryl and anti-nausea meds) my PM Dr is pushing hard for me to try out a 'Spinal Stimulator'.

Me... I don't want any more (fill in the blank) operations... I have had 20 major (19 on the same ankle and 1 sinus) and around 8 minor operations in the past 9 years and the thought of more... 1 to place the wires for the testing phase to see if it works then another to remove them followed by at least 1 more to place the permanent wires and generator under the skin is enough to drive me insane.

Anyone have any experience with this device?
Is it even worth it?
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Old 07-26-2007, 04:36 PM   #2
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Re: Internal Spinal Stimulator

hi. i have the same problem with the meds, everything makes me sick and i sleep all day, i am on methadone right now and it works great for the pain(rsd) but the side effects are almost not worth it. i will be doing the scs trial. i didn't want to because i get grossed out easily and i don't know if i can handle having something in my skin. anyway, i will do the psy test 1st and then the trial. i think you should give it a try. from what i hear, it helps great for the pain and if it gets me off narcs, great, good luck with what ever you do, patti

 
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Old 07-26-2007, 06:55 PM   #3
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Re: Internal Spinal Stimulator

Hey there...

It is not that I need something to help me get off narcotic pain killers... it is that I cannot take them at all... even on the highest levels allowed of benydryl I itch to the point of madness and end up gouging my skin...

I have tried- darvon, darvocette, percidan, percocette, vicodin, tylox, oxycotin, morphine, kadian, methadone, tramadol, loracet... the list goes on and on..

With neurontin and celebrex and cymbalta I had severe nausea and could not keep it down...

I react to locals with insane itching... I react to general anesthesia with my BP skyrocketing then crashing (the surgery comes to a standstill and is stopped while they try to keep me alive, which is why they use spinal anesthesia for all my operations)

The only time I ever had pain relief was when they kept the epidural in after surgery once for a day... that was 24 hours of pure bliss and my husband thought that it must be some pretty strong stuff because I acted weird. Heck, I acted weird because I was not in pain for a change.

I just don't want any more surgery... I am already looking at an amputation and that is fine with me... if they cut the thing off they can slice and dice it to their hearts content... but at least 3 more for something that I know nothing about and have no clue if it will make a difference... ohhh (fill in the blank) NO!
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Old 07-27-2007, 10:14 AM   #4
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Re: Internal Spinal Stimulator

hi again. i know that must be really hard to deal with. my father had his thumb amputated because of infection (he has diabeties) anyway, amputating does not take away the pain, the brain does not know the body part is missing so even though he has no thumb, the pain is the same. have you given the spinal cord stimulator a thought? i will be doing the trial shortly. i hear it works real well to reduce the pain. well, good luck and i hope you feel better, patti

 
Old 07-27-2007, 04:21 PM   #5
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Re: Internal Spinal Stimulator

I have the scs and It has its pros and cons. I have cervical leads implanted. The incision is a few inches down from the base of my skull. My battery is on my side and against my ribcage. The stimulation is very positional. If I move my head to the right I can turn it off and I get shocked very easily if I move wrong. I was in a neck brace for 6 weeks and the recovery was not easy. I will tell you that It does help with pain. Not all of my painful areas and not complete relief. However, I like having it. Unfortunately, I am having the entire surgery again to replace the leads that migrated. It is worth it to at least do the trial. That way you won't wonder "what if?" and regret not trying it out. The trial is really pretty easy to get through. The perm. implant surgery is not easy and you will be awake for at least part of it. Good luck!
Mcarr

 
Old 07-27-2007, 09:00 PM   #6
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Re: Internal Spinal Stimulator

Quote:
Originally Posted by pattihabs View Post
hi again. i know that must be really hard to deal with. my father had his thumb amputated because of infection (he has diabeties) anyway, amputating does not take away the pain, the brain does not know the body part is missing so even though he has no thumb, the pain is the same. have you given the spinal cord stimulator a thought? i will be doing the trial shortly. i hear it works real well to reduce the pain. well, good luck and i hope you feel better, patti
I already deal with phantom pain issues... back in 2003 they did a sural-nervectomy hoping for pain relief... they cut my sural nerve and redirected it into my achiles tendon... so when the outside of my foot "itches" or burns or feels like it is in a vice I know to rub my achiles tendon or use my TENS unit on it... the feeling is not coming from the outside of my foot but the end of the cut nerve. (BTW, the sural nervectomy was a complete waste... the only thing it did was numb the skin... the skin never hurt to begin with, it was the tendons, muscles and ligaments that are painful and still are, but now I have numb skin that I have to watch for sores and infections)
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Old 07-27-2007, 09:11 PM   #7
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Re: Internal Spinal Stimulator

Quote:
Originally Posted by mcarr36 View Post
I have the scs and It has its pros and cons. I have cervical leads implanted. The incision is a few inches down from the base of my skull. My battery is on my side and against my ribcage. The stimulation is very positional. If I move my head to the right I can turn it off and I get shocked very easily if I move wrong. I was in a neck brace for 6 weeks and the recovery was not easy. I will tell you that It does help with pain. Not all of my painful areas and not complete relief. However, I like having it. Unfortunately, I am having the entire surgery again to replace the leads that migrated. It is worth it to at least do the trial. That way you won't wonder "what if?" and regret not trying it out. The trial is really pretty easy to get through. The perm. implant surgery is not easy and you will be awake for at least part of it. Good luck!
Mcarr
I would be awake for the whole thing, since they will only use spinal anesthesia and conscious sedation with me due to other health concerns... (I could tell you stories... singing along at the top of my lungs with some music being played as the Surgeon is cutting through bone and telling him to try to run that noisy saw in key... for some reason he was not ammused)

Truth of the matter is... after 19 surgeries under spinal in the past 9 years do I really want them shoving more things in there than are absolutely necessary? I am willing to let them take my foot so that I do not have to go through any more surgery... one more... only one... I have had enough. If I do the study and they decide I am a candidate they will push for the implant... and if the wires migrate... another... and if the generator fails... another...

There comes a time when you just have to stop.

The cause of all my pain is that blasted foot... my right knee is slowly being destroyed compensating for that left foot, taking all the weight for 9 years... I do not want to have to end up replacing my knee just because I got the spinal stimulator and the pain decreased in my foot... even without pain it is a totally unstable ankle and foot... the muscles, tendons and ligaments are shot.

I just want my life back
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Old 07-29-2007, 07:19 AM   #8
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Re: Internal Spinal Stimulator

Quote:
Originally Posted by penybobeny View Post
I would be awake for the whole thing, since they will only use spinal anesthesia and conscious sedation with me due to other health concerns... (I could tell you stories... singing along at the top of my lungs with some music being played as the Surgeon is cutting through bone and telling him to try to run that noisy saw in key... for some reason he was not ammused)

Truth of the matter is... after 19 surgeries under spinal in the past 9 years do I really want them shoving more things in there than are absolutely necessary? I am willing to let them take my foot so that I do not have to go through any more surgery... one more... only one... I have had enough. If I do the study and they decide I am a candidate they will push for the implant... and if the wires migrate... another... and if the generator fails... another...

There comes a time when you just have to stop.

The cause of all my pain is that blasted foot... my right knee is slowly being destroyed compensating for that left foot, taking all the weight for 9 years... I do not want to have to end up replacing my knee just because I got the spinal stimulator and the pain decreased in my foot... even without pain it is a totally unstable ankle and foot... the muscles, tendons and ligaments are shot.

I just want my life back
I hear you. I totally understand. You have been through enough! If you have your foot removed will the pain go away? I too want my life back. I never would have imagined that my fusion surgery 3 years ago would have been the start of a bigger nightmare. I try to look at the good in each day and keep going the best I can. Hang in there.
Mcarr

 
Old 07-29-2007, 09:50 PM   #9
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Re: Internal Spinal Stimulator

Quote:
Originally Posted by mcarr36 View Post
I hear you. I totally understand. You have been through enough! If you have your foot removed will the pain go away? I too want my life back. I never would have imagined that my fusion surgery 3 years ago would have been the start of a bigger nightmare. I try to look at the good in each day and keep going the best I can. Hang in there.
Mcarr
There is a big chance that I will still have phantom pain, but I already deal with that to a limited degree... the major plus would be that after a prosthetic was fitted and with some PT I would be able to walk with a secure feeling and my right knee would finally stop taking all the stress and might be able to heal somewhat.

My first surgeon said something when I first started my nightmare of repetative surgeries that I still remember... "It takes an injury to damage you... it takes a surgeon to really screw you up"
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Old 07-30-2007, 04:40 AM   #10
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shawley HB User
Re: Internal Spinal Stimulator

I have the spinal stim . It's not working properly yet but after I get it fixed I think my leg /feet and toe pain will be alot less. I really don't know what to tell you , it sounds like you don't want to give it a try ? If your in so much pain (like I am )why wouldn't you try something that might work for you ? You will get some relief from it , maybe not all your pain but atleast 50% of it. Either try it or put up with pain the rest of your life .

Don't worry about the leads moving if you do what your supposed to they won't. I have the surgical ( laminectomy) paddle implant. Really if you want any kind of relief try it out. If you don't like it they will remove it.

PS. I have a buddy who lost his legs in a car accident , he has phantom pain in both legs and it's been 15 years now.
Shawley

 
Old 07-30-2007, 07:32 PM   #11
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Re: Internal Spinal Stimulator

It is not that I do not pain relief... I would love to have a day with less than a 7 on the pain scale and would desperately love to miss out on the 9-10 times.

My issue is the surgeries... I have had so many... I don't want to have a proceedure that has a high chance of more to come... surgery means pain that cannot be controlled while healing... surgery means for me the possibility of waking again in CCU on a ventilator again...

If I had heard that there were alot of people with favorable outcomes I would be more tempted... but right now all I see are more and more surgeries... 1 to start the trial, 1 to end the trail, 1 to implant the permanent implant and maybe more after that...
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Old 08-03-2007, 04:42 PM   #12
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Re: Internal Spinal Stimulator

Look , the stimulator surgery is done while your awake . Your not put under just a little drowsy. Its a simple procedure. I have to have another simple surgery to pull my lead down lower on my nerve so it will reach my feet and toes. I had 4 spine surgeries and hope to GOD this simple lead thingy is it .

I understand your fear of not getting better but not doing anything could lean to more serious issue's.

I sure hope you figure out how to ease your pain.

Shawley

 
Old 08-03-2007, 11:41 PM   #13
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Re: Internal Spinal Stimulator

Well, after doing some research on the spinal stimulator and discussing it with my PC I was told that it is not a good thing for me.

I have other medical issues that require MRI's (one in particular that can only be definatively done with a MiBG, a specialized form of MRI) and you cannot get a MRI with a stim in.

I did not know it when the PM doc was giving me the pressure to agree to this, but you should not get a Spinal Stimulator is you have a pace maker, implanted defibulator, need MRI's on a known basis or are looking at the possibility of a cardio-albation. This info was both online and was confirmed when I called a company that makes them and discussed it with my Dr.

Maybe, in the future when the medical conditions requiring repeated MRI's are under control I will then be able to re-visit this idea, as for right now though my PC will not give me clearance for this proceedure.

Thank you to everyone that chimed in and discussed the pro's and cons with me... it was the discussion here that had me decide to check more fully into it and ask my PC for clearance prior to my next PM appointment to hurry up the process.
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